Why I'm Afraid of "Jinxing" Myself Into a Cluster Headache Cycle
Last updated: November 2023
The world of episodic cluster headaches is a weird one. For several weeks or months of the year, we face insurmountable pain. We are desperate to stop the attacks, even if that means fantasizing about removing the afflicted eye with a spoon. You claw your way through daily attacks; then suddenly, you're okay again. You don't have to worry about waking up in pain and reaching for your oxygen mask. In fact, you can shove that five-foot tank back in the closet and not think about it until next time. And somehow, we do that.
Why don't I want to talk about my attacks?
I don't like to point out the "beast" in the corner. Many of us call cluster headaches "the beast" because the sudden, severe pain seems like an "it." The sharp, stabbing sensations feel like there's a cruel monster behind the knife, slashing your temple and eye. So when the beast isn't knocking, I'm not about to invite them to the table for tea. Once my attacks are gone, I don't want to talk about how long this episodic cycle lasted. I don't want to discuss my cluster headache triggers, how much oxygen I went through, or my plan for next time. I procrastinate preparing for the next cycle like it's that algebra final from college I neglected to study for until the night before.
How would I jinx those pain free days?
The first days and weeks after an episodic cycle are euphoric. I'm happy and carefree because I know I have plenty of time to enjoy my life before the beast strikes again. As time passes, my mind and body start to get antsy. I tend to have episodic cycles in the late winter or early spring and late summer or early fall. That's a large window of time to walk on eggshells. During those months, I'm afraid to say the word "cluster" in any form because the beast in the corner might wake up early.
Am I the only one?
What's fascinating to me is I'm not the only one who doesn't want to jinx myself regarding cluster headaches. Clusterbusters is a nonprofit organization that hosts an annual patient conference in September. Coincidentally, this time of year is when episodic patients tend to go into a cycle, and chronic patients experience a higher volume of attacks. We often talk at these meetings about how episodic patients are afraid to discuss cluster headaches when out of cycle. However, chronic patients don't live with that fear. One friend with chronic clusters told me he would rather be chronic than live with the uncertainty that they could start up any day.
Have I had cluster headache attacks during the conference?
The first year I attended a conference, I went into a cycle on the way to the airport to fly home. The second year? It happened on the plane. Now, did the conferences cause my cluster headaches? Did talking about my pain for three days make the attacks come back? Most likely not because it was the time of year I dread already. I've attended 7 Clusterbusters conferences since 2014 and went into cycle after three of them.
How long does this go on?
An irrational fear of provoking the beast by saying its name makes many episodic patients like me stay quiet. We bide our time until the sharp knife wakes us up one agonizing night. Then, we drag the oxygen tank out of hiding and settle in to do it all over, fighting attacks until we can pretend they don't exist again.
Are the family and friends you will be seeing this holiday season understanding about migraine?