How One Phrase Changed My Perspective on My Migraines

“Migraines are weird,” is the single most comforting thing a doctor has ever said to me. It could sound dismissive, but to me it’s an important truth that renders all the often frightening migraine symptoms benign.

The generic description of a migraine (throbbing one-sided pain, sensitivity to light, sound, smells, nausea and vomiting, dizziness) is really only the tip of the symptom iceberg. Below the surface is a mass of symptoms so vast and dense that it can take years to examine them all. After decades of having attacks I feel like I’m still exploring symptoms, gently separating the migraine from me and finding those places where we have fused into one.

There are symptoms that I’ve had since childhood, like my hands feeling tiny or my lips and face feeling giant. There are times when my lips curl into a frozen sneer or my face muscles twitch uncontrollably. It can feel like the skin on my face is getting too tight. My vision can go blurry or else everything looks as if I’m seeing it from very far away. My head goes numb or tingles for hours or days. Extreme vertigo, nausea, and vomiting can happen with or without the presence of any head pain, but it’s still a migraine.

There are symptoms that seem like they must be a sign of something dire. My husband spent months convinced I was having mini-strokes because I would sometimes have speech aphasia. Before, during, and after attacks I get confused and disoriented, exhausted and weak, and irritable and distracted – sometimes to the point of endangering myself. I cry uncontrollably, not with sadness, but as if a chemical switch in my brain has been flipped.

In the dark I think I can feel my eyeballs twitch and shake. When I close my eyes it is as if my eyelids are illuminated from the inside. At times someone lightly brushing my arm or my leg is a sensory overload to the point of pain. Sensitivity to sound, light, and smells isn’t limited to the time of a migraine…they are always there, like background noise, and can trigger an attack. A spoon accidentally dropped at dinner can end the evening for me. An hour spent around a chemical smell can put me in bed for a day. The list of symptoms goes on and on from there. And there are more symptoms, like auras or seizures or fainting or the slightest breeze causing pain, that I don’t have.

For years these symptoms were overwhelming and frightening. To cope I convinced myself that I was causing some of them, which, while self-defeating, gave me an illusion of control. But by repeating my mantra of, “Migraines are weird,” I can avoid getting hung up on the symptoms. Obviously, it doesn’t make hanging over the toilet, stuttering instead of speaking, or feeling my face contort any less physically uncomfortable, but it does allow me enough emotional distance of the neurological oddities – over which I have no control and aren’t a sign of anything more or less than migraine – slide past me.

“Migraines are weird,” has been on the tip of my tongue a lot recently. The neurologist wanted me to try a new preventative medicine, which is always a calculated gamble. Nothing is designed to specifically treat migraines, so you take a drug for something else that as a side-effect might suppress migraines. Or it could make things worse. In this case, the drug triggered vertigo and nausea that dragged on and on for days and was followed migraines with head pain and vertigo. As the world tilted and shifted under my feet, I lost track of hours and large portions of days disappeared from my memory. The smallest things — standing up or smelling something unpleasant — unleashed more unpleasant symptoms. It was frustrating to be stuck on rocking ship for one, but I wasn’t scared because I knew for certain that all this strangeness was absolutely normal.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Baluchis