A lightning strike to my head sent me reeling to my knees. Something had exploded inside and set my whole head ablaze with searing flames of agonizing torture. You probably think I’m exaggerating. Honestly, those words don’t do it justice. It was much, much worse.
By the time we get to you, we have already been through hell just trying to get a proper diagnosis and a valid prescription for oxygen. It takes an average of eight years just to get to this point. By the time we get to you, we’re exhausted and desperate. We need your compassion and understanding. Instead we’ve often been met with ignorance, stigma, and a mountain of inflexible red tape that isn’t relevant to our illness. Your outdated policies have made life unreasonably difficult for people with cluster headache and it needs to stop.
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.
Today is International Cluster Headache Awareness Day. If you’re not familiar with cluster headache, please visit the links below to learn more. Rather than offer a clinical explanation, I’d like to take this time to tell you a little about life with cluster headaches.