“I’ve Had One of Those Cluster Headaches!”

People usually mean well when they say have you tried: drinking more water, eating a banana (weird but okay), or my least favorite, I’ve had one of those. Sadly, those phrases often do more harm than good. These comments show headache and migraine patients that you want to fix us instead of accepting and supporting us. They also signal that you may not think we’re already doing all the things to get better. The fact is most of us have tried all prescribed options and probably a few wackadoodle ones, too (ahem, daith piercings).

Hydration and nutrition are essential, but they have little to do with cluster headaches. But don’t worry, we’ve tried those too. I spent six months on the “headache diet,” subsisting primarily on rice, beans, and chicken.

Can you have just one cluster headache?

Strangers telling me, “I’ve had one of those,” when I tell them I have episodic cluster headaches is my biggest pet peeve. It's right up there with “I get migraines too.” (Cluster headache is a different diagnosis and completely different treatment.)

It’s not possible for you to have a cluster headache only once. As the name suggests, these severe, one-sided attacks come in clusters. Cluster headaches happen regularly and often at the same time of day. You would only get a cluster headache diagnosis after having attacks for at least 7 days, with anywhere from one attack every other day to 8 a day. Of course, you would also have to meet the remaining diagnostic criteria, but you get the gist.

Before I found a preventative treatment that worked for me, I would get 4-6 cluster headache attacks a day. My typical day in an episodic cycle meant attacks at 8 pm, 2 am, 8 am, and 2 pm. If I was taking a lot of sumatriptan, then they came every 4 hours.

What do attacks feel like?

Another unique aspect of cluster headaches is every untreated attack is uniformly brutal. The condition is nicknamed “Suicide Headaches” because of its sudden and severe nature. The pain spikes to a 10 within a few minutes and stays there for up to 180 minutes (rarely more). It’s a poignant type of agony. The kind that leaves you with no other thoughts other than how terribly this hurts and how you can’t possibly ever feel worse. The attacks leave you as suddenly as they come on. You’re left in a state of disbelief, thinking, “What the H*** did I just go through?”

You would remember in fine detail if you ever had a cluster headache.  You would remember the color of the wallpaper and the feel of the wall against your hand as you hit or punched it. You would remember the runny nose, streaming eye, and the mixture of both fearing death and welcoming it with the next stab of ice-pick-like pain in your temple.

The next time someone tells you about their type of head pain, you don’t have to compare a headache you once had to their ongoing struggle. Just listen.

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