My fingers are crossed that I’m in the postdrome of a debilitating five-day migraine. My entire head throbbed with sharp pain localized above my left eye, my left ear ached and burned, and my teeth were intensely sensitive. I was nauseated and dizzy. I’ve been massively fatigued, my limbs feel weighted down, my mind is barely coherent, my body aches. It was definitely a migraine and, yet, migraine’s most famous symptom, head pain, was only a level 4.
This is my new reality. The pain is much less severe than it once was — for which I’m endlessly grateful — but the migraine attacks still come frequently and can still be debilitating. People who have “silent” (acephalgic) migraines can attest to this, but applying it to my own experience is difficult. While non-headache symptoms have certainly been troublesome in my years with chronic migraine, the screaming head pain has always taken center stage. With pain demanding my attention, I didn’t realize just how much of a toll the other symptoms took. Not only am I regularly astonished by how severe the non-pain symptoms are, I’m so used to pain being my guide that I tend to dismiss the impact of any other symptom.
I keep thinking that migraine, with it’s wide-reaching and varied symptoms, is a weird illness, though I have to wonder if migraine isn’t weird, but that popular understanding of it is flawed. Despite patient advocates and migraineurs yelling, “Migraine isn’t just a headache!,” head pain is the symptom everyone associates with migraine. Even I, one of those people who gets that migraine is a neurological disorder with symptoms that affect the entire body, get hung up on the head pain part of the issue.
I wish we could rename migraine and start fresh. That we could disseminate the current knowledge about migraine without the historical baggage and misunderstanding. That we could focus not on the head pain part, but on the neurological, whole body impact. Maybe then the world of non-migraineurs would have a bit more respect for the major impact this illness can have on a person’s life. Maybe then I could have a little bit more empathy and sympathy for myself when I’m laid up and telling myself, “But this migraine’s not that bad.” Because, while the pain was mild, the rest of it was pretty miserable.