Strangers become family

Once in a great while, the stars align, all the lights come on, and words are no longer necessary — strangers become family in moments. That’s what happens when I meet another cluster headache patient. Although most of my time is spent talking about migraine, cluster headache is far more disabling. I’ve been living with it for 17 years. For most of that time I faced down excruciating attacks several times each week. It truly is the worst thing I have ever experienced.

It is a rare headache disorder.

Few doctors, even headache specialists, are skilled at recognizing its symptoms. Even fewer actually know how to treat it. Cluster headache is often confused with migraine. The average patient will wait 8 years for an accurate diagnosis. For some, the wait is much longer. These long wait times are especially egregious when you learn that cluster headache is the most painful medical condition in existence. When asked to compare it to other horribly painful conditions, patients swear that nothing is worse — not even broken bones or unmedicated childbirth.

We are misunderstood.

Because cluster headache is so rare, it is misunderstood. At best, we get half-hearted, ill-informed sympathy from migraine patients. At worst, we are told to “suck it up” and “get a grip.” We are reprimanded for complaining because, “It’s just a headache. It can’t be that bad.” So we suffer in silence. It is unfortunate that there is not a better word for the pain we do experience. Headache is to cluster headache as a nail is to a nuclear explosion. One of the unique characteristics of cluster headache is that is does not respond to painkillers. Even morphine won’t touch it. Oddly enough, many of us find relief from breathing high-flow oxygen and the occasional injection of sumatriptan. Pills take too long so we don’t even bother.

We live a solitary life.

The frequency and severity of attacks make it difficult to work. Home life is disrupted, too. Attacks tend to occur in the middle of the night, so we are chronically sleep-deprived. When in an active cycle, attacks can hit several times each day. We must keep oxygen tanks and injections close by at all times. This makes getting out of the house challenging, even on our best days. Many of us are home-bound for fear of having an attack in public. The attacks are so excruciating and violent that they often frighten people who will call 911 unnecessarily. We are usually unable to communicate during an attack, so some of us who do go out in public carry an information card with us just in case.

Now there’s hope.

I work with Cluster Headache Support Group. It is a non-profit organization dedicated to increasing awareness, promoting solid scientific research, and offering support and education to cluster headache patients. Today is the start of CHSG’s annual meeting and I am privileged to attend for the first time. Despite my many health challenges, I’ve discovered ways to occasionally travel for such events because the benefits of participation far outweigh the potential cost to my health.

Events like this weekend’s meeting are a welcome respite from that kind of scrutiny. Cluster headache patients can relax and be genuine with each other. If an attack hits (as they frequently do), we don’t have to make up excuses either. Strangers are welcomed like family and embraced tightly in huge bear hugs. Those nods of agreement and looks of understanding are priceless.

This article is part of the July 2016 Ultimate Blog Challenge