migraine awareness week

Apparently it's Migraine Awareness Week, and when I went to check out the Migraine Trust's website about it I came to realize that as someone who has lived with migraines for over a decade I wasn't as aware of them as I thought either. So, how am I expecting those around me to be when it isn't talked about that much (much like most other medical conditions aren't) even though it is so common?

I was under the impression that quite a lot of people got migraines - at some point in their life, a few times, occasionally, or regularly. But I did not know that it's actually the third most common disease in the world (after caries and tension-headache, according to the Migraine Trust - I got a lot of my facts from them and if you'd like you can find all their references on their site to see that these aren't just pulled out of a hat!) and one of the most disabling ones as well.

What I did know, however, is how little understanding people who have not experienced a migraine have of them. With so much information available, how is it that so many people still think 'oh, so you just have a headache' when hearing the word 'migraine'? That is such a belittling thing to say to anyone. Even if one's only symptom was a headache, even if one was having a regular headache instead of a migraine, it is not just a headache. Anyone who's ever had a headache or head injury should know that even if it's a small one it is painful. And I do expect that most people have experienced a headache or head injury of some kind during their time on this earth. So, how come other people's headaches and migraines are still met with such contempt and dismissal?

Around a billion people in the world are affected by migraines. They usually start in teenagers and young adults, and are experienced most frequently in middle age. One could only get a migraine once or a few times, symptoms can lessen with time, they can continue the same throughout one's lifetime or they can get worse and more frequent, even chronic. Every case is obviously unique. What isn't unique is the pain experienced, the periods of lost productivity, the possible negative effects on one's physical and mental health, one's life and the lives of those around.

Although a (painful) headache is the most common and most mentioned symptom of a migraine, I like it being described as a complex neurological condition with a wide variety of symptoms. The cause of it is unknown but there's strong indicators of it having a genetic component. For example, in my family myself, my mum, my auntie and possibly my grandma have all had migraines. As it is seen as one of the most disabling illnesses, some have even compared it to dementia or active psychosis among other conditions.

This is also something I hadn't really taken into consideration before: migraines have recently become one of the most common causes of disability. Personally, I would never go about calling myself disabled or saying I have a disability - just because I feel like, for the most part, my life and activities aren't that substantially affected. But at the same time I've found myself recently thinking that in my current situation I would not be able to work full-time, or do anything full-time (and luckily I am in a position where I can take life easier and slower and stay at home a lot). So maybe I should be changing the way I think of myself (or am I speaking completely out of turn - I don't know, maybe I'll get into it another time)? I do constantly attach phrases and labels such as 'spoonie', 'spoonie life', 'slow living', 'chronic illness', and 'chronic pain' to myself, though. Disability and/or absences are a part of life for someone with migraines, after all. 25 million school or work days are missed per year in the UK due to migraines. And in people who do stay at work with a migraine productivity is decreased by at least 30%.

Despite being so common, migraines do not receive a lot of public funding, nor are they taught a lot about in medical schools. In the European Community the estimate is that it is the most costly neurological disorder. Fairly effective drugs (triptans) for migraines started to be developed and more available only in the 1990s. Migraines are one of the most common conditions that people try to treat with alternative treatments. The satisfaction patients have for their treatment is low and self-medication or not seeking medical help at all is alarmingly common.

Understanding that migraines are much more than just a headache is a start, as is being aware of other possible symptoms. But, like with anything and everything, everyone's migraine is different from others. And there's so many different types of migraines that have their own specific symptoms, too. There's the headache, there's the most usual symptoms and then there's the more unusual and individual ones. What I think is less known, as well, is that migraines have phases. All of this can be experienced during a migraine:

They can start hours or days before the proper pain (prodrome), and this was something that for me for example took a long time to figure out. Prodrome symptoms can be anything from altered mood (for example, irritability and depression) and fatigue to cravings and muscle stiffness (especially neck) to changes in bowel movements and sensory sensitivities.

The main distinction people are aware of with migraines is that they come with or without aura. An aura can last from a minute to an hour, and they can be visual, sensory, motor or a combination of these in nature. The visual ones are the most common (think of the most stereotypical zigzagging lines). Other aura phase symptoms can be speech or language difficulties, feeling like the world is spinning, and less commonly motor problems. Some even have hallucinations or delusions.

During the pain phase, the most commonly known migraine headache is on one side (unilateral), throbbing, between moderate and severe, and lasting from a few hours to three days. But it doesn't have to be like that and bilateral pain is found in those who have migraines without an aura often as well. The length and frequency changes: you could be "lucky" and only experience a couple migraines in your life or have them multiple times a week, although around once a month is a medium. In addition to the pain, other usual symptoms include nausea and vomiting, sensory sensitivity (especially to light, sounds, smells), fatigue or irritability, blurred vision, stuffy nose, diarrhea, sweating, light-headedness, confusion. All the fun stuff. But there's also more uncommon symptoms, like aphasia, allodynia, the Alice in Wonderland Syndrome, memory loss, vertigo, heat intolerance, decreased hearing, temporary blindness, severe anxiety and panic attacks.

Just like there can be symptoms before the actual attack, there are often lingering ones after the most acute pain is over (postdrome). The postdrome phase most often includes a sore feeling in the area where the migraine was. Others are feeling hazy, feeling tired or "hungover", cognitive difficulties, mood swings, and weakness - all of which can last for up to days afterwards.

People with migraines often have triggers that are most often caused by physiological, dietary or environmental features. Common physiological triggers are stress, hunger, fatigue, and hormonal changes (hence one's menstrual cycle can affect a migraine, as can pregnancy, and many do not get migraines after menopause). Dietary triggers differ hugely according to the person and these could basically be anything. Environmental triggers are most often related to lighting, air quality and sounds. It can be up to 24h after exposure to a trigger that the real migraine symptoms start. Sometimes you will just be told to avoid your triggers which is fair enough if it is something very particular: if you know a certain kind of cheese triggers you, you can probably stay away from it. When your trigger is something more vague or something like the quality of air, it's ridiculous for a doctor or anyone to suggest merely avoiding your triggers. We can't all live in our own little bubbles.

In addition to what they already are, migraines are likely to result in people having other conditions as well, most often depression and anxiety. And just as a (chronic) condition will have some degree of a negative impact on the migraineur, they also frequently occur for their family and circle of people around them. One study concluded that "According to many studies, migraine and other disorders lead to widespread suffering, reduction of quality of life, and marked impairment of participation, both in work and social activities." I don't want this to come across too much as living with migraines is pure hell, there's nothing good in our lives. Because that's not true. But it does have an effect on my daily life, it has affected my personality and how I interact with the world and it continues to be a part of me that I do have to take into consideration. Hopefully everyone will be a bit more aware of this, hopefully there will be a bit more understanding and hopefully less of "it's just a headache".