Burning from the inside out

“I survived because the fire inside me burned brighter than the fire around me.” ~ Joshua Graham

The greater Kansas City area has an estimated population of 2 million and spans 15 counties in two states, Kansas and Missouri. It has been my home for most of my life. I have a disease so rare that in 16 years, I’ve only met one other person here who shares my diagnosis. Statistics say there are at least 998 more in town. The patients I do know who share this disease, I met on social media. Every one of them thought they were alone, too.

I have Cluster Headaches.

You may have seen YouTube videos of patients enduring an attack or heard that Daniel Radcliffe has been diagnosed with them. You may have heard that they are also called “Suicide Headaches” and that the pain of an attack is one of the worst things a person can experience. Unless you live with it too, that’s probably the limit of your experience with this devastating disease.

Don’t tell me about your migraine, please.

I’ve had migraine disease my whole life. The worst migraine attack pales in comparison to a cluster headache attack. Believe me, I know the difference. I would rather face down my worst migraine attack during natural childbirth while having my leg amputated without anesthesia every day for the rest of my life than have ONE. MORE. #@!%& cluster attack.

This beast changes you.

You toughen up real quick. Because of the unique nature of cluster headaches, patients are physically unable to lie down, sit still, take a nap, or remain calm. I scream, curse, pace, rock, pull my hair, shove my fist in my eye socket. Heaven help the poor soul who gets between me and my only relief — a tank of compressed oxygen attached to a high-flow regulator and mask. It is impossible to be a passive victim of cluster headache. The disease simply will not permit it.

I tried once to explain to my husband how unique cluster headache patients are…

“Headbangers are the “Patriot Guard” of headache medicine — rough around the edges with hearts as big as Texas.”

During the 2013 Migraine and Headache Awareness Month, I described them like this…

“Cluster attacks are best fought in bare knuckles, hand-to-hand combat. This is brutal warfare. Anything “high tech” would trivialize it. When I think about fighting a cluster attack, scenes from Platoon, Rocky, Predator, and Mortal Kombat flash through my mind. Fighting cluster headaches is ugly, bloody, and violent. No weapon can adequately fight like the spirit of someone with nothing to lose.”

We may be small in number, but we are mighty. 

There’s just no other choice. Because of the unique characteristics of our disease, we tend to be more actively involved in our treatment. Migraine patients joke that they know more about their disease than their doctors (which we often do), but clusterheads really do. Most doctors will never meet a cluster headache patient in their entire careers. I’ve had doctors challenge me by asking how I know I have cluster headaches. When I list off the trademark symptoms in rapid-fire succession, they’re suddenly very quiet. It helps that I was diagnosed by a neurologist who also has cluster headaches.

o2ptimaskDuring a brief hospital stay for intractable cluster headaches in 2013, I was the talk of the nursing station. They’d only heard about cluster headache in school, so I was quite the attraction. One nurse kept a wide berth when I frantically shoved my own tubing into the wall-mounted oxygen port and jacked the flow rate up to the max. Later she admitted she’d never seen anyone have a cluster attack and decided to keep out of my way because I seemed to know what I was doing.

Damn straight I did.

Rule our headache disorder? We’ve got no other choice.

Want to know more? Stop in for a visit with me and 6,000+ of my closest headbanging friends at The Cluster Headache Support Group or check out our information at ClusterHeadacheInfo.org.

I promise we’ll be gentle.

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