So I’ve been threatening to write a post about my migraines ever since I found out that June is National Migraine and Headache Awareness Month. It’s also often been delayed…because of migraine. XD However, this June I am determined to give it another attempt. Hopefully this will be detailed and informative enough that others will read this and take some new knowledge and understanding away from it. You’ll learn a bit about me, a bit more about migraines and headache disorders, and you might even learn a bit about yourself. Do you experiences migraines or headaches? Did you know a migraine can be painless, or that they can even cause hallucinations? It’s a neurological disorder, so that means there’s all kinds of fun and interesting things that can happen. lmao
Before We Get Into It:
Migraine and Headaches are a neurological disorder. Despite being so prominent (it’s the 3rd most common illness in the world!), migraine is still a disorder with little understanding and sympathy, even within the medical world. It’s a disorder that can be absolutely debilitating, and is so much more than just “a bad headache” (though 👀👀👀, “any pain is too much pain”, as my PCP puts it).
Now, there are many intersections of prejudice/bias at work when it comes to people’s view on migraine. It is a disease that most often affects women, is a struggle to be diagnosed with if not being seen by a neurologist (specifically a headache specialist), and, like all illnesses and disorders, is more difficult to be diagnosed with if you are a person of colour. Ableism is also something to take into consideration when learning and hearing about migraine and headache disorders. As a neurological disorder, it is met with the same problems other neurological conditions are often met with. People only know and understand so much about the human brain, and because of how neurological disorders affect how we sound, how we speak, how we look, how we move, and how we think, people are often scared of these disorders and the people who have them.
Every year more is learned about the brain, and, in turn, migraine and headaches. There are many different types and possible symptom overlap between them and other disorders that affect the brain. You may even be diagnosed with one type, but later find out your headaches are caused by a different thing entirely.
Ok, so what exactly is migraine? The way I’ve found it easy to understand is thinking of migraine as the brain’s reactions to changes within or outside the body. Everything the body experiences is processed through the brain. What you see, what you smell, what you hear, even what you eat affects it. The brain is run on chemicals, but, migraineurs brains are very sensitive to the chemical changes that happen throughout our day to day lives.
Migraine frequency and intensity often changes as we age. Puberty, menstruation, and menopause are often cited as reasons for changes in migraine behaviour. Migraineurs also often lack certain vitamins and minerals that are important to hormone production and regulation. Magnesium and B vitamins are often toted as potential treatments, or additions to treatments as migraneurs often lack them. Metabolic disorders are often comorbid with migraine, which makes sense, seeing as the glands involved are often located in the areas of the brain that some parts of the migraine process takes place. Chemicals are key when it comes to migraines, and understanding their affect on the body, and how your environment and genetics determine your migraine experience.
As your brain attempts to process these chemical shifts, it responds to it in a variety of ways. While at one time it was thought that migraine attacks were caused by changes in blood vessels, this is no longer the thought. Since so little is known about the exact causes of migraine and how the changes the brain undergoes in the midst of an attack relate to the symptoms, we can really only make educated guesses based on what we do know. What we do know is that migraineurs are often more sensitive to pain than others. Migraine attacks happen as a result of being triggered by something. These triggers can be a number of different things, amount of sleep, diet, hormones, sensory experiences, stress, and more can be the cause. Migraineurs brains are also physically different in some ways than non migraineurs brains, and even the type of migraine depends on these differences. Migraine attacks also create changes in the brain over time.
When it comes to fully understanding migraine, the best thing to do is just listen to people’s experience with it. There are so many types, so many reasons for migraine or headache, and so many ways symptoms manifest that it is impossible to learn about migraine if you don’t listen to those that experience it. If you only go after what the researchers have to say, you won’t get even half of a full picture.
My Migraine Story
I was born a migraineur. It isn’t something I suddenly acquired over time. It’s likely I inherited it from my father, who also has migraine. As a kid I was prone to bouts of head pain and dizziness as well as some other, less memorable issues. I’ve since looked back on and realised these were migraine symptoms. Despite my occasional bouts with intense migraine episodes throughout my childhood, I hadn’t considered them to be disabling until my late teens.
My migraine began to more noticeably affect my life around the time I reached my third year of highschool. Leading up to this time, I became increasingly concerned about my mental health, but I did not know enough about migraine to realise how my neurological difficulties could possibly be related to my occasional headaches, strange aura, and brain fog. After the first semester of of 11th grade my family moved. At this time I’d already been having troubles sleeping and waking up, however sometime after going to my new school, I began to be completely incapable of waking up in the morning.
These episodes, which still occasionally happen, were very odd and unlike anything I’d ever known to even be remotely related to migraine. Nearly every other morning, I would have difficulty opening my eyes and controlling my limbs. It felt like I was having a seizure, though the seizing was not yet as intense as it would later become. While not visible to others yet, my muscles would spasm, mostly on my left, though my right would also be difficult to move and spasm to a lesser degree. This would last for up to an hour, eventually, usually around 10-11 am, my body would finally have calmed down enough that I could get up and go about my day. It was very taxing physically and mentally. Physically, because my body was flexing and unflexing uncontrollably, and mentally, because it was very upsetting. I couldn’t do anything, not even talk, and no one around me understood what was happening. Most of all, I myself didn’t understand what was happening either.
Despite going to the hospital, no one could say what exactly was wrong. I was told it wasn’t a seizure or tumor because the tests done didn’t show that, given ibprofen (despite not having headaches at this time) and told with a shrug, “maybe migraines?” I was referred to a neurologist at another hospital, but never was able to make the appointment. It’s hard to do that when you’re not up during business hours and can’t speak because of a stutter. People aren’t very accommodating to those with slow or intterupted speech. Language became very difficult for me after these attacks (and during my regular migraine, on top of already being dyslexic and having other language issues) and at times I couldn’t even read, let alone think of words.
Around this time, since highschool was soon ending, I was focused on attending college. I started doing my own research on migraine, and begin doing better after treating my attacks like migraine and avoiding my triggers and taking medication like Excedrin. Did my migraine go away and continue to “get better” just because I traded highschool stressors and scheduling for college? Nope. lmao
While I was fine for a bit, I began to have trouble waking and spasming again. Eventually I left the program I was in and gave up on morning classes. They just weren’t doable and I wasn’t in a position to see a neurologist yet for answers. My migraine did get more manageable with less stress, however I remained very limited as far as what I was capable of doing every day. I took it very easy on myself and just did what I could, however my episodes continued, as did all my other migraine symptoms like, brain fog, language difficulties, sleep issues, memory problems, etc.. I wasn’t able to do school at this rate, so I decided to focus on my health and try again at a later date.
Even after leaving school behind, I wasn’t able to get a proper diagnosis for migraine until about two years ago (I left school in 2015). After school we moved again. I’d tried and failed a couple years to see a doctor, but finally in 2018 I was able to get new insurance and had a PCP who then promptly got me a referral for a neurologist and I was given an actual diagnosis! Migraine! Well, actually Cervicogenic Headache and Migraine with Aura! Suddenly everything made sense!
My weird “not siezures,” well…they aren’t seizures, but they are muscle spasms. I have cervicogenic headache caused by a pinched nerve. Basically, the base of my neck is extrememly tight, and because of this it is pinching on my nerves at the base of my skull. Yeah, not great.
This tightness also affects my whole body. Despite being a fairly active kid, I did notice that sometime between middle and highschool I did begin to have more difficulties stretching and moving. My neck and shoulders had been uncomfortably tight or felt pressured. We’re not entirely sure why exactly I developed a cervicogenic headache, it could have been anything from a shaky roller-coaster with bad neck support to having a long neck and trying to get my hair washed in the sink. XD What’s most important is I now have a name for what I’ve been experiencing all this time.
After I was diagnosed with cervicogenic headache I was put on the medicine I take now (noritriptyline as a preventative, I’m still trying to find an abortive/pain medication), did a few months of physical therapy (😭😭😭 I was so tight my shoulders felt like bone! Bone!), and now it’s down to keeping up a routine and being weary of my migraine triggers. I’m still working on trying to go back to school and getting a job (had to leave my last job because of how often I had episodes/attacks), but things are definitely looking brighter now than they did ten years ago.
The Stages of a Migraine (What is a Migraine?)
While I mention my cervicogenic headaches as a part of my “migraine story,” the truth is a headache is not the same as a migraine. This is a little easier to make sense of once you remember that migraine do not necessarily need to involve pain to be considered a migraine, and that pain usually happens on one side of the head. In fact, a migraine isn’t necessarily even a thing it’s more like a state of being. We know a migraineur’s brain is different from a non migraneurs brain. They look and act differently, though science doesn’t exactly know why exactly migraine disorder exists, we do know that a migraneur’s brain can be thought of as in a process of “having a migraine.”
A migraine attack, as they’re often called, actually consists of four stages. First is the prodromal stage, next is the aura stage, then the “attack“, and last is the postdromal stage, often called the “hangover” phase.
- Prodromal Stage
This is the first stage of the migraine and considered the warning stage. This is often the stage you might want to begin taking preventative measures in. For me, I tend to tie this stage into my aura, as I also think of aura as a warning (and another chance to prevent/medicate an attack). My symptoms that present depend on what triggered the migraine.
Like many people, my prodrome can lead to me being sluggish, or randomly energised . I often get irritated, and have food cravings. Some more common prodrome symptoms are yawning, feeling tired, and an increased need to pee.
There are some symptoms that are more difficult to tell if they are aura or prodrome related. These include difficulty swallowing, stomach problems (constipation, appetite loss), neck stiffness/pain, limb weakness, brain fog, and confusion/forgetfullness (difficulty thinking). For me, brain fog and confusion tends to be a constant throughout my entire process, so it’s appearance usually depends on what type of headache or migraine I am having and why it was triggered.
Not everyone experiences aura. Aura can be thought of as another way of “warning” of an impending attack. It can also be thought of as the “beginning” of the attack, before the pain comes.
Like with my prodrome, my aura depends on my migraine trigger, it also depends on whether or not I’m even having a migraine, as my headaches also often involve aura. Migraine with aura is a different type of migraine than migraine without. It comes with it’s own difficulties as far as trying to manage and medicate symptoms (an example of this is trying to medicate hormonal migraines as caused by menstruation). As every migraine type is different, this isn’t exactly that much of a surprise, but it is important to point out that not all migraineurs experience aura, and thus how you treat the migraine may be different. Not all migraine is the same and every experience is different! Even auras can very vastly.
Aura I have experienced is:
- visual aura (I see little white squiggly lines, sometimes black lines, and depending on their visual position depends on how intense the pain will be)
- language problems (I have difficulties, reading, writing, speaking, and understanding language, it has on occasion become so bad that I literally can not read. I’m also dyslexic and have other learning disabilities/language processing issues so this symptom may just increase already existing issues)
- weakness in arms (usually my left)
- weakness in the face (often feels like I’m having a stroke, but as I can still do things and my strength returns it is not a stroke, just migraine)
- spasms (those not seizure seizing attacks, as well as less intense body twitching/spasms)
- hallucinations (visual and auditory, though auditory are more rare and a sign of a very intense migraine to come, I first started hallucinating about a few months before my spasms started)
- brain fog
- sudden depressed mood
- anxiety (often a general unease and nervousness)
- nausea (sometimes part of the attack)
- tingling (my newest aura, it comes and goes with the amount of pressure on my nerves)
The “attack” part of migraine is the one most people are familiar with. Most often (not always) this stage is known by its head pain. It can be said that those who experience “Silent Migraine” skip this part, as they don’t experience the head pain. Becausse this is just a theory however, I personally would say that silent migraine may still have the attack phase, as my prodrome, aura, and postdrome feel different when I’m having a silent migraine.
Along with head pain, people often experience light sensitivity, noise sensitivity, and sensitivity to smells. As I mentioned a bit while talking about aura and prodrome, sometimes symptoms can overlap/begin during this stage too. Nausea, vertigo, and even body temperature changes can happen during the attack part.
Over the years my migraine attacks have changed. As a little kid I used to have bouts of vertigo. At the time we hadn’t yet known much about migraine and these were just thought of as strange random episodes of no serious cause. I began having vertigo episodes a little bit before kindergarten, around four or five years old (from my memory, possibly earlier).
On top of vertigo episodes, I had the typical head pain and sensory sensitivity. I may have also been having abdominal migraine. I did a lot of sleeping as a kid. XD Sleeping a headache off was and still is my best medicine. I had a lot of growing pains, and headaches can often be had with growing pains. While it’s not entirely clear why children experience growing pains, they might be related to a child’s pain sensitivity. Allodynia is a common symptom of migraine. I was a very tenderheaded kid, so this checks out. Allodynia isn’t exactly related to the attack phase, it’s just a natural symptom of having a migraine brain, however, because of migranuers pain sensitivity, this may be why we have headaches.
Between my preteen and teen years, I didn’t actually have as many headaches as I did as a child, or I would have as an adult. However I was still having migraine, just “silent” ones. My attack staged looked a little more like this:
- Brain fog
- Language difficulties
and a strange feeling in my head I couldn’t really explain. The best way to put it is I felt like my brain was made of cotton. I also occasionally have nausea, though that is usually with particularly bad migraine, or related to weather/atmosphere shifts.
Lately I’ve had a bit of a mix of attack symptoms, but the usual symptoms are sensory sensitivity and head pain, with the added addition of neck tightness and shoulder and neck pain.
4. Postdromal Stage
The Postdromal Stage is the final and sometimes longest stage (though for everyone this varies). It is often called the “hangover” stage and is sometimes the most difficult to cope with. This stage is essentially your body dealing with the aftermath of your previous symptoms. If your attack includes pain, you may still feel some lingering aches. An action as simple as bending over to pick up something that fell may bring on a flare of pain. You may feel exhausted, after all, you’re body and brain was just under an intense sensory experience! That’s of course going to be tiring. You may still have some lingering confusion and difficulty thinking. You might not feel as “smart” as you usually do, struggling to accomplish or think about even “simple” tasks. This experience can last from a few hours, to a few days. If you ever wondered why a friend or family member doesn’t just “get back to it” after a migraine or headache, this is often why.
When I’m in my postdrome phase it often lasts 3-4 days. Depending on how close together my migraine/headache attacks are, it can feel as if I’m never really out of it. When in the postdrome stage I often feel exhausted, fuzzy brained, and physically weak. I also occasionally feel an up spike in mood, which happens for some. For others, a low mood can follow the end of a migraine.
What Does This All Mean?
While we often notice and understand the “attack” part of the migraine, it’s important to understand that migraine and headaches are more than just this one part. Migraine is a long drawn out experience that can last as long as a few years. It’s more than just a few hours of your life interrupted by “a bit of pain.” Because of migraine, like all disabilities, people have to alter their entire way of living.
People often say that, “we all experience pain,” and while that’s true, we don’t all experience the same pain in the same ways. Some are more sensitive than others, and that’s partially why people may be experiencing migraine and headaches in the first place. Besides, if someone you know is in pain, isn’t it better to treat that pain and make sure they feel better than to scold them for having a natural reaction to being hurt? Don’t you also owe it to the people you care about to learn more about what ails them and how best to support them?
It’s often hard for people to understand how neurological issues can be disabling. When something is “all in someone’s head” or “invisible,” that doesn’t negate their very real symptoms and experiences. Migraine is a legitimate neurological disorder. It’s lack of knowledge and understanding does not give permission to be dismissive, it just means you need to educate yourself and learn to empathize with others experiences.
As a Black woman, I’ve often struggled with getting any acknowledgement of my need for support and help with issues, whether health related or otherwise. Now more than ever, it is important to be aware of how our biases affect how we treat and look out for each other.
Because of my migraine I struggled in school and at work. I eventually had to leave school and quit my job because I was unable to get the support and have access to the resources I needed. I’m more knowledgeable of my disorder now, but it’s mostly because I was able to research on my own and kept pushing for better treatment. A common problem for those who are disabled, is that people don’t always have the energy, time, or resources to fight for their care and better treatment. It’s exhausting having to keep finding a new doctor, spending hours at a computer or in the library looking for more info on diseases that have similar symptoms to yours (and in my case, I couldn’t find much information on my more “extreme” symptoms and how they related to migraine/headache), and it’s also not always accessible when you do finally come across something.
I’m lucky in that my family has enough money that I can currently go without work and not have to worry about what I’ll eat or how I’ll sleep. My parents were very encouraging when it came to me trying to find out what was going on, and as we knew of a family history of migraine, following the migraine train of thought was very easy and made sense. I also started tracking my headaches with a migraine tracker and was introduced to the Migraine World Summit through the app. Through the MWS I was introduced to more migraine resources and information and I’ve only been learning more ever since.
Even with my relatively privileged living situation, I still had and have other struggles as I try to keep my health in check and stay well. Migraine and headache aren’t my only problems, but they’re the only thing I’ve been able to be seen for and properly diagnosed with, and even this was a struggle. My mental health, learning disabilities, and other issues are all things I know exist, but don’t always have the opportunity or resources to professionally handle. It’s also difficult to find work, as my options are very limited as someone who doesn’t have a degree and has to keep her triggers and ability in mind when applying for jobs or looking for other options. It’s often difficult not to not feel like a burden and, as I can’t drive and may never drive because of symptoms, my world is very limited in a country with such poor public transportation infrastructure.
Migraine is often comorbid with a number of other disorders and diseases and I’m no different in this regard. It’s hard to tell what began what, if there even was a beginning outside of just being born, but having to deal with migraine on top of other problems is difficult, especially when it comes to what to focus on and how to get treatment. There are so many issues that crop up just because of my perceived gender, Blackness, and ways people identify me. I’m a plus sized person and this means a lot of assumptions are made about my health and how I take care of myself. Never mind the fact that I’m 5’9 and was never going to be under 120 pounds lmao. Ableism comes in many different forms and people don’t treat folks kindly when they believe they’re not the most intelligent. My language difficulties mean I am often talked over, ignored, or misunderstood. This happens no matter what ways I try to talk to others, as it’s difficult to completely avoid using written or verbal language. I struggle to speak for a variety of reasons, but none of these difficulties endure me to those who aren’t patient and willing to endure the conversational interruptions or struggles to make myself clear. It is also difficult for people to understand the extent of my disability, as people have a hard time accepting disability they cannot “see” for themselves. If you could see my brain, we’d have issues! The brain shouldn’t be exposed to the outside lmao.
Having migraine is often most difficult because of how you are treated by others. You can be doing everything right, but when people aren’t treating you correctly in turn, this causes issues. While migraine and headaches themselves can cause mood disorders, your environment and relationships also play a factor in this.
Of course someone who is surrounded by positive, supportive, and understanding people would have an easier time dealing with the adverse symptoms of their disorder. People thrive in healthy environments. Healing is always difficult when you are unsafe and unable to focus on your well-being. I don’t regret leaving school or my job, but I do regret how I felt forced into a bad situation. Sometimes the problem is that those around you don’t understand, and sometimes you don’t have the words to ask for help either. That was my problem. I wasn’t sure what my rights were, how to get the help I needed, or what even to call my situation. Sometimes people are purposely offensive, they don’t want to learn and they don’t want to grow. Most of the time though, people are just ignorant, but because of this they are careless. Carelessness, however well intentioned, hurts people.
I often have to remind myself that my experiences matter. I’m not being extra when I make sure I’m being treated correctly. It isn’t wrong to call nonsense out when nonsense is happening. My disability is real, and I am allowed to be disabled. This doesn’t make me any less of a person, and it’s ok to be as careful with my body as any non-disabled person is with theirs. Just because others want me to put myself at risk just to fit their standards doesn’t mean I have to. That’s a personal problem. lmao It’s none my business.
It’s difficult being kind to yourself when so much around you refuses to accept it. Black women aren’t allowed space to take care of themselves and be vulnerable. Most of my struggles stemmed from others inability to accept that a little Black girl could be weak and need help. I wasn’t used to having my requests for help answered. How would I suddenly become good at asking for and receiving help just because I magically became an adult over night (as turning 18 often is treated like)? My struggles with my health, while physical, took a very heavy mental and emotional toll on me. My relationships suffered and still struggle because of how alone and unheard I felt. It wasn’t just a feeling, it simply was my reality.
So many others have stories like mine when it comes to their disability. It doesn’t matter what kind of illness or disorder you have, it’s often difficult for people to see past their biases and treat others with humanity. Whether it’s in a medical setting or just your casual day to day, it’s hard not to expect the worse because it happens so often. Ableism is such a deeply rooted problem that it affects every aspect of our lives. There is no part of society untouched by ableism. It’s so ingrained it’s even often left out of the conversation when talking about other issues that affect the world. Disability is often last on people’s list of things to address. That’s unsurprising, but still disappointing.
Having migraine means I often get to see many different sides of ableism. Sometimes people know I’m disabled, sometimes they don’t. Sometimes people know to what extent, sometimes not. When your disability isn’t always visible, people often forget to keep up the act of caring, or become careless and say or do hurtful things just because other habits are already so ingrained. It’s not always intentional or malicious, but it is hurtful nevertheless.
We live in a world full of differences, and when saying, “celebrate those differences” that means all differences. Migraine and headache disorders are steadily becoming more and more known, but people’s understanding and support towards those with these disorders won’t change until people start addressing their ableism. Sometimes this ableism is internalised, if you yourself experience headaches or strange neurological (or otherwise) symptoms, it’s ok to look for help. Sometimes the greatest hurdle we face is ourselves as we internalise messages of valuing profit over lives, breaking limits, and narrow definitions of what “real work” is.
At the end of the day, we’re the ones who have to live with our bodies. No one else does. Others assumptions about you and what you should do and how you should behave have nothing to do with what’s best for you, as you know it to be. Our understanding of our bodies and the nature of our bodies changes as we age. You may not be disabled now, but you may become disabled later as so many people do. With everything going on in the world, and the many daily dangers and stressors of life, it’s important to understand that your life has value. Whether you fit a neat box, or exist in a more liminal space of being, you matter. Your health matters. It’s ok to take the time to take care of yourself, and in looking out for your health, it can lead to others also being able to take care of themselves. You can’t always help people if you yourself aren’t ok. In understanding how we differ from others, we can better appreciate others differences and understand how to be there for each other. In better understanding ways others differ from us, we can better understand ourselves.
You might not have headache or migraine, but you might know someone who the things I’ve mentioned here remind you of. You might follow one of the above links and realise you want to talk to your doctor about a different diagnosis or issue to look further into. You might just be curious about headaches and migraine. I can’t imagine what it’s like to rarely ever get a headache, but I suppose if that’s your experience it’s probably strange to try and imagine the opposite. XD
This got a bit away from me. I didn’t mean for it to get long, but then again, for a disease so little known about, there’s a lot of ground to cover! This is only a little bit. I hope you follow some of those links and learn a little more for yourself. I hope those links are helpful in further understanding headache and migraine if you’ve never come across this info before!
If anything I’ve said is helpful, makes you feel a little less alone, or widened your understanding of anything I’ve mentioned today, let me know! I’d love to hear about your experiences, and if this resonated with you at all.
You can support my Black, broke, disabled artist self via Ko-Fi or Patreon. XD If you haven’t already seen my last post on this, this summer I’m doing World Building June. Ironically migraine has made it a little hard to consistently work on my storytelling, so I figured I’d have a World Building Summer this year. XD If getting a peep into the creative process interests you, check it out! I’m currently working on day 2 for Yaisha and day 1 for Moon Woman. 👀👀👀 Moon Woman’s been really interesting to me and tbh, as a story about a Black woman just falling in love and being loved it seems quite timely. I’ll probably be working on it more than Yaisha. The playlists for it are also bomb…I may be using them to write any and everything right now. XD
Anywho, hope y’all having a lovely day! I’m actually up for once to finish this up and share without needing to schedule it! Yay to fulfilling years long goals! XD