Everybody has something. A pain, an illness, a life-altering event, a lost one, a lost hope. These somethings can be difficult and painful. Sometimes they are definitional. As we look up to see them in our rearview mirror, they “are closer than they appear.” Rumi’s poem “The Guest House” said it best.
Like everybody I know, and everybody I like knowing, I have had lots of somethings. For the first 27 years of my life, I was an undiagnosed dyslexic. Spellcheck released me from the daily ignominy that followed me through my academic and early professional careers. I was diagnosed with a blood disorder when I was 25, and then, at age 29, two weeks after our wedding, my spleen was removed to address the medical challenge.
The one something that remains—cluster headaches—is really something.
The Mayo Clinic offers this description online:
Cluster headache is a rare and severe type of headache that causes intense pain in or around the eye on one side of the head. It’s typically the most painful type of headache. You may have several headaches over short periods of time. This is known as a cluster. Cluster periods can last from weeks to months. Then they may stop for months or years.
Cluster headaches are also known as “suicide headaches,” which tells you just about all you need to know.
These first arrived on my doorstep with unyielding, powerful pain in the middle of the night while I was staying at a friend’s house in Boston. I paced the room and hallway, not knowing what to do and, literally, not knowing what hit me. Generally speaking, I will get a “cluster” every four or five years, and, over the course of four to six weeks, I will have an episode at least once a day. The intense pain is always on the left side of my head, and the episodes can last for an hour.
To better understand the dynamic of cluster headaches, consider going to your local Home Depot or Lowe’s to shop for a quality hammer drill (consider the Ridgid R50111, seen as a good value for the price—$149 at Home Depot) and an accompanying 3 in. x 12 in. Milwaukee Steel Scaling Chisel Masonry Bit. Rather than purchasing these, just stare at them and think about pressing the bit to a spot above and slightly to the left of your eye and pulling the trigger. I ask that you not take this exercise any further.
Carol Burnett was once asked what giving birth was like. She responded, “Take your lower lip and pull it over your head.” Cluster headaches are like that.
I always have a neurologist as part of my medical team and always keep headache medication with me at home and when I travel.
A sumatriptan self-injectable has been my savior during these periods for the past 30 years. I carry one with me every time I travel. I have injected myself in hotel rooms, airplane bathrooms, and friends’ houses. A course of high-dosage Prednisone can diminish the duration of a cluster. A doctor once mentioned that use of this steroid can give you a “moon face.” I asked him if that meant I would have a dark side. He didn’t get it.
The philosopher in me says that cluster headache episodes are windows into my mortality—or at a minimum, my fragility. The rest of me thinks the philosopher is a moron.
Cluster headache PTSD follows me wherever I go, which is why I always have access to a neurologist to call when one strikes.
When I learned that Dr. Gilbert, who had been my neurologist for the past 10 years, had retired, I sought out a new physician who updated all my headache prescriptions. She also reached out to Medicare to preauthorize a prescription of Emgality (300 mg, three syringes), a newer medication shown to shorten the length of headache clusters. Fortunately, Medicare approved payment of $170 toward the medication. Unfortunately, my share of the cost would be $970.
Thus, the point of this missive: if you can afford $1,000 for three injectables, you can find relief. If not, go buy a hammer drill. Broadly, that is the state of health care in the United States.
