The Rules on Migraine Island

So you're stranded on Migraine Island. What is the landscape here?

If life here were a puzzle, or a tricky game, how would we play it? How might the island shape us? Later, we'll talk about the experience of migraine (its symptoms), and how to take care of ourselves to find our way off the island, but meanwhile, what must we bear in mind during all the time we are marooned?

Before diving into Migraine Island's rules as I understand them, let me touch on some basics.

Highly Subjective Stuff

In these pages I am writing about what I "know" about living with chronic or severe migraine. I "know" this based on my own experience, but also from reading books, talking to quite a few doctors and healing types, sharing stories with other migraineurs I've met, and surfing online.

I'm not a health care provider or scientist, so please take everything here with a huge block of salt and talk with your doctor or shaman or whoever you've got before making any sudden moves.

Unfortunately, while doctors are important and can be central to our healing, they aren't always all that useful when it comes to migraine. They may not know or tell you about some ideas that work for other people. They might put you on drugs that can turn out to be more trouble than they are worth.

Still, if you haven't already, try to find a doctor who listens well, has a supportive disposition, and has the kind of open, inquisitive mind that makes good doctors great ones. And do your homework, as best you can.

I put "know" in quotes a couple of times in the preceding paragraphs because, at the end of the day, this is all highly subjective stuff. I doubt that your experience exactly matches mine, even if our symptoms and triggers are identical (which they probably aren't). The way it will feel in our bodies, and in that realm beyond the verbal centers of our brain where words seem hardly to suffice, will be different. Sometimes different in only very private ways, ways that are difficult to describe and need not impede the commonality of our shared experience.

The subjectivity of the migraine experience will remain at least until science gets a better grip on what exactly is going on with our bodies before, during, and after migraine attacks. But I think it will remain subjective long after that, too, because we are all limited to what our minds can ascertain and communicate. And migraine has a way of bringing these limitations into sharper relief.

Migraine as a Way of Life

I've tried to describe a single migraine attack here and have also outlined what life in the shadows is like, but if you have never had severe or chronic migraine, or a comparable neurological affliction, a shortcut to understanding might be this: try simply thinking of the sickest you've ever felt. That. The kind of sick where you are in a lot of pain, and everything about you is seriously out of whack. Maybe the flu took you all the way down. You are not operational. Things have stopped working in significant ways. You aren't yourself. You sense that to be much sicker might be...permanent. Then, when the worst is over, it takes you some time to recover, longer than you expected it would.

Chronic migraine is what people call the disease when we are struggling with it most days. They call it "episodic" when it comes and goes less frequently. Most people who have migraine have it episodically — in intervals of months, or even years. While migraine is still migraine whether it is episodic or chronic, once it becomes chronic, it's a bigger problem.

Chronic migraine stops being a significant but occasional setback, like the seasonal flu might be, and becomes instead, like it or not, a way of life. The difference is profound. If migraine is the enemy, the episodic experience is one with occasional combat. That experience sends you to chronic Migraine Island when the enemy invades your camp, hounds you wherever you go, and showers you with ammunition more or less continuously. And you have no shared holidays, so the onslaught is unrelenting.

The Rules on Migraine Island

Rule One: Migraine is a Head Game

Rule Two: Migraine Affects Everything We Do

Rule Three: Migraine is Confusing

Rule Four: We Are Not Migraine

Rule Five: Migraine Has Many Faces

Rule Six: Migraine is a Mismatch Between Inputs and Outputs

Rule Seven: Migraine Sucks Up a Lot of Happy Juice

Next up...
Rule One: Migraine is a Head Game

More Migraine Island!