Man sleeps on chair as pixelated tentacles approach from darkness.

Living with the Migraine Monster

Looking at ways that people with migraine depict this disease, one of the terms I see often is the “migraine monster.” It’s a term that particularly resonates with me, for many reasons. After all, migraine can be scary and it’s often hard to know how to fight it. More so, it seems to lurk in the dark, jumping out when you least expect it; all the things we tend to associate with a monster! However, I’d like to take it one step further. This monster also seems to have artificial intelligence. If you live with migraine, then hopefully this will resonate with you too.

It can be a scary disease

One of the biggest triggers for fear is the threat of harm. It doesn’t take a lot of imagination to realize that, once you have experienced an uncontrollable migraine attack, fear is all too real. Migraine is a “whole-body experience” impacting all of our senses, It goes so far beyond the pain that is often associated with a “headache.” It can cause intense nausea, vomiting, flashing lights, loss of vision, dizziness, vertigo, numbness, loss of speech, overwhelming fatigue, brain fog, GI upset, depression, anxiety, and much more. Our lives often come to a grinding halt or are radically changed. What lies ahead is uncompromising pain, a myriad of symptoms and triggers, and a future that no longer seems either good or certain.

It’s hard to know how to fight it

If only it were as simple as taking an over-the-counter medication, lying down for a few minutes, or the latest greatest new drug. Sadly, that could not be further from the truth. The reality we face is a complex riddle of how to fight this monster. Taking medications can take hours away from our lives, or even cause intolerable side effects. What works for one migraine attack may not work for another. Finding a doctor who is educated in treating migraine is an often insurmountable challenge. Dealing with insurance denials is beyond discouraging. Trying to read through the latest understanding of a grossly underfunded and under-researched disease is exhausting. It can feel like being in a boxing ring with zero training. The result? You simply don’t know how to fight the monster in your life.

It lurks in the dark

The unpredictability of migraine is often one of the biggest challenges we face. Trying to figure out our “triggers” and how to manage or avoid them. Making plans but always needing to have a caveat “pending how I feel.” Never going anywhere without a “go bag” of tricks to try to manage an attack should it suddenly happen. We even have a reluctance to go to sleep at night for fear of being rudely awakened in the early hours of the morning by a full-blown and now uncontrollable attack. While we can often have a sense of when an attack “might” come, we rarely know for sure; and even if we do know, there may be little to nothing we can do about it.

It seems to evolve

“The modern definition of artificial intelligence (or AI) is ‘the study and design of intelligent agents’ where an intelligent agent is a system that perceives its environment and takes actions which maximizes its chances of success.”1  It is something that sees what is going on and adapts to improve what it is doing. Obviously, this is not a scientific observation when it comes to migraine, but for many of us, it FEELS as though migraine has AI! It seems to adapt and change as we learn how to manage it. What used to work for us can suddenly and inexplicably stop working. New and confusing symptoms can appear out of the blue. Things we thought were not triggers can end up added to an ever-growing list of what must be avoided at all costs. It’s almost as though the monster says, “A-ha! You thought you understood me but… SURPRISE!”

Poll

How much has your migraine disease changed or evolved over time?

Wishing for understanding

This monster that we face is beyond challenging. I find myself wanting to say: “Please shine a light on this monster so that I know what I’m facing. Please help me figure out how to fight it. Please show me how I can win the war for control of my life.” However, most of all, what I really hope for is understanding. Understanding that this monster is real, that it can be devastating, and that those of us with this disease fight a battle that impacts every area of our lives. And finally, it is my dream that at some point in the not too distant future, our children and grandchildren will be given the answers to help them defeat this monster!

If you live with migraine disease, does the concept of a “migraine monster” resonate with you? Have you ever found yourself feeling as though migraine “catches on” to the ways you treat it and adapts? What helps you overcome your fear?

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