What Happens When Your Headache Disorder Gets Better?

I’m in that strange but euphoric phase of life where breastfeeding hormones keep my cluster headaches and status migraines at bay. It’s been three and a half months since my last cluster headache cycle and a few months shy of a year since my last status migraine. The last trimester of pregnancy was surprisingly kind, with no head pain. I had a brief bout of cluster headaches for a week after childbirth, but my head has been blissfully light since then.

When you’re used to semi-regular head pain, finding yourself with ZERO shadows or auras is surreal. Shadows are a term clusterheads use for a twinge of pressure that happens when an episodic cycle starts and before each attack. Sometimes these shadows lead to full-blown attacks. Other times, it’s just a nagging sensation.

How often do my husband and I talk about headache?

My husband used to have chronic cluster headaches; it’s how we met. But last fall, he finally found a medication that works like a miracle for him. We used to discuss his attacks or mine every day. It was just part of our conversation. Instead of “How was your day?” we would say, “How is your head?” That’s how pervasive and detrimental headache disorders are to your quality of life. Head pain was engrained in our everyday routine, but now we barely talk about it. He still gets shadows, but those niggling feelings aren’t enough to warrant a conversation most weeks.

I like to think we don’t talk about our headache disorders as much because we’re in such a great place. However, another part of it is the superstition. No one wants to jinx it by talking about the “beast.”

Are we planning our time around headache disease?

I used to avoid making plans for fall and spring because that’s when my cluster headaches would hit. If I had a bad migraine week, I wouldn’t make plans until the status migraine broke. My husband experienced “high cycles” with chronic cluster headaches around January and August. We would brace ourselves for that change. But now, we make plans or leave on a whim without a second thought about the time of day or season because head pain doesn’t dictate our abilities. At least, not right now.

How long will this remission last?

While we may not discuss cluster headaches daily anymore, it’s an unspoken understanding that our conditions could come out of remission at any time. The 13 months I breastfed my firstborn were also pain-free, but I was quickly met with both types of head pain shortly after weaning. Maybe I will breastfeed my second forever (kidding!). My husband’s remission has astonished us all, including his neurologist, but we’re all holding our breath. The thing with cluster headaches is that no treatment seems to work indefinitely.

Being pain-free has given us a much-needed reprieve and a chance to enjoy time with each other and our little family. I know this won’t last forever, but until then, I’m soaking up every carefree moment that cluster headaches and migraine disease give me.

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