Hello from a Migraine Grownup

I wasn’t always grown up about migraine. Instead of focusing my attention on strategies to deal with symptoms and manage triggers, I hoped, prayed, and wished they would go away. This does sometimes happen with headaches tied to hormonal fluctuations. Women “of a certain age” find their migraine attacks disappear.

Maybe that would happen to me.

I am well past that age, still making quarterly treks to my neurologist to plan battles like generals in an endless ground war. I am fortunate to have access to good healthcare, good insurance, and a society that keeps looking for medications to provide relief. Many of the 1 billion people in the world who suffer do not have this privilege.

That is a grownup statement. It took me a long time to be grateful for anything to do with migraine disease. After all, it had robbed me of a quality of life I felt I was due, like anyone else. Until I put that into perspective and met some of these “anyones,” I held a very narrow vision of what quality of life meant.

Migraine is vicious when the disease is in its active phase. The prodrome phase, or early warning system, can begin hours or days before head pain strikes. The worst part is the inability to think clearly or even read. As a younger woman, I pushed myself harder to do what my brain was incapable of doing, then got mad at myself because I failed. This frustration is made worse by feelings of sadness and irritability pop up. Migraine again.

This phase brings sensory sensitivity. Intolerance for bright light, loud noises, or, for me especially, smells. How hard it is to function in school, at work, anywhere with these disadvantages.

There is extreme fatigue. The feeling that if you don’t lie down now, you will drop.

As a migraine grownup, I know this is the best time to take any acute medications like triptans prescribed by my doctor. It is my best chance to avoid the head pain entirely. It is also a good time to rest, if that is possible.

The aura phase is a full assault on the senses, thought to be caused by changing electrical and chemical brain activity. Not everyone experiences aura. This is when the stereotypical flashing lights, bright spots, zig-zag lines, or even temporary blind spots can happen. But other senses can be impacted too. I always feel pins-and-needles tingling and numbness in my face. If I weren’t being treated for migraine, it could be mistaken for stroke.

My speech is also affected. I suddenly can’t find the right words and start slurring my words. Again, how hard that is to manage in school and the workplace, especially when you don’t understand what is happening.

As a migraine grownup, I now understand it and am no longer ashamed of it. I can tell when this phase is coming on, when the medication missed its mark. I can excuse myself or explain what is happening. But I had to have the knowledge first.

The headache attack can last from hours to days. Migraine headache is generally distinguished from other types of headache by throbbing pain on one side of the head, among other characteristics. With the pain comes nausea, sometimes vomiting, and continued hypersensitivity. The newer medications often prevent the pain from becoming severe enough to drive sufferers under the blankets in a darkened room. We can at least participate in our lives, though not fully.

When I was younger, I pushed through intense pain when the outcome that would have served everyone best would have been for me to rest. My heroics only prolonged the attack, yielded suboptimal performance as an employee, and a feeling of being only partially there for my family. Most of my brain was putting out fires.

As a grownup, I admit, I am still reluctant to rest. The medications are better, so I can spend more time outside of the darkened room. But like most chronic pain sufferers, we hide our symptoms for as long as possible so we don’t disappoint or alarm those around us.

Old habits die hard.

It is difficult for those who have never experienced migraine attacks to understand that just because the headache pain has passed, the migraine attack is not over. We call it the “migraine hangover,” but officially it is the postdrome phase. This phase can bring a couple of days of continued extreme fatigue and low energy. There is lingering brain fog. We can feel “out of it.” I have even felt muscle aches, stiffness, and weakness, like the flu.

Until I understood the biology behind the cycle of migraine, I thought I could just pick up where I left off before the whole episode began. The brain seems to need time to reset.

Migraine has been one of my life’s most relentless teachers.

It has taught me that strength doesn’t always mean pushing through. Sometimes it looks like cancelling plans, asking for help, or resting when every part of me wishes I could keep going. As a grownup, I have learned to hide my struggles and smile through pain, although I admit, the pain has been bad enough where I cry. We show up when we’re hurting. We tell people we’re “fine” because explaining migraine feels exhausting.

But migraine doesn’t just affect me. It affects the people I love. My friends and colleagues. My community. It had a huge influence on the type of mother I was as I raised our children. And the type of grandmother I now am.

Migraine affects how we move through the world.

I write because there are children growing up with migraine who need to know they are not alone. I write because there are parents trying to support children whose pain others cannot see. Because invisible illnesses deserve the light of visible conversations.

Migraine is part of my story. It may be part of your story. But it is never the whole story.

I’m glad you found your way here.