Every twelve to sixteen months, I experience a period of extreme intermittent head pain, in the form of cluster headaches. The period lasts four to six weeks, and during that time I generally experience between one and three attacks a day. Normally they strike about an hour after going to sleep and/or in the wee early hours of morning. Another dangerous time is the late afternoon.
Attacks strike with little warning. In the space of minutes, I shift from feeling and looking normal, to being unable to comfortably talk, eat, drive or focus on anything in particular. My face goes pale, and my right eye gets watery and puffy. It feels as though an ice pick is going through the right side of the front of my head. Most cluster periods pass with me only missing a day or two of school or work, but many other areas of life are affected.
My husband experiences the greatest fallout from this month of unrest. Almost every night, there is me getting up from bed, taking medicine, wincing, and fetching an ice pack. The medicine often works within fifteen to thirty minutes, but sometimes, especially after two or three weeks, the pain does not respond to the medicine, or the attack does not completely subside. During these times, I try to go elsewhere in the house so as to not wake him with my whimpering and rocking. I have never heard him complain about any of this.
Many foods do not appeal to me during this time. Exercise is dicey, and can either abort or provoke an attack, although mostly it provokes. Alcohol is off limits, and only very controlled caffeine feels ok for me. Bright lights and sounds can be painful (similar to to a migraine experience, I'm told), so I can't really watch movies and even restaurants, malls, or bars can be uncomfortable. Friends have driven me home, or held my hand during an attack. Once, during my second year of teaching, my mom had to pick me up from work, because I could not finish teaching or drive myself home.
I try not to look for special favors from anyone, but it is necessary to warn employers, professors and co-workers. Once I had an attack during a team-taught ESL math course at a high school. My co-teacher took over, and I hid behind a lab table on the floor in the back of the room and waited for the medicine to work. She was such a fantastic teacher that the students hardly noticed. Another time, a professor went on the hunt for ice, so that I could remain at school and not miss the several hours of workshop time ahead of us.
In the effort to reduce the frequency of the cluster periods, the number of cluster attacks, and the intensity of the attack pain, I have tried every thing I could think of or learn about. I once went a year and a half without sugar, caffeine and chocolate. I have altered my sleeping habits. I have applied water mixed with cayenne powder to my nostril. I have had cocktails during a bout, knowing full well an attack would come immediately, and then just taken the medicine and carried on with the party (that was during university, when it seemed a huge tragedy to have to abstain during a fun event). I have crept into the freezer in the home of my friend, looking for an ice pack or a bag of frozen vegetables because I was caught on a trip without my medicine.
Once an attack came while we were eating at a restaurant to which we had walked, and I couldn't make the walk home, so my husband had to run ten blocks to get the car in order to pick me up, while I sat on the grass on the side of the road, and rocked in pain. I have applied lidocaine to the inside of my nose with a Q-tip, and I have tried natural supplements, including melatonin, magnesium and feverfew (magnesium has been most impressive so far). I have changed my hairstyle to alter the weight of my hair and sometimes have stopped wearing certain shoes for a time when they become too jarring. Carrying a heavy purse can also cause trouble during this time.
Cluster has come upon me again; it started over the weekend. It will be a long month, and hard. Since I was diagnosed with cluster in my late teens, I've learned a lot. I've learned that my head could prevent me from being covered on a health "care" plan, and I've learned that cluster will likely never go away. I've learned that it normally impacts middle-aged men, and that it likely has something to do with my hypothalamus and circadian rhthyms (body clock regulation). One study I read said that they affect 69 out of 100,000 people; in my life so far I have met two other sufferers.
However, in spite of all of that, it could worse. Some people have this condition all the time, with no year off in-between bouts. This is called chronic cluster, and if you meet someone like this, and they are out in the world, doing normal every day things, you should be amazed by them. They are in a constant battle with excruciating pain, and I don't know how they survive. Which means I am lucky. So far, in almost twenty years of this, I have never had a bout longer than five or six weeks.
I am lucky in so many ways. My month of pain reminds me to appreciate my many months of no pain. It reminds me that you never know what someone has going on privately. It reminds me that sometimes people are crabby or mean not because they are bad people but because maybe they are just getting by at that moment. Maybe they are in pain right now.
I am lucky right now because I have plenty of medicine. When I have enough medicine, I am nicer, less irritable, and more able to handle this condition. Having medicine makes me more productive and more able to participate in the world around me, and this needs to be considered when our culture decides how to organize health care. Anyone could be me, one day healthy and the next day possibly experiencing excruciating, debilitating, unpredictable pain.
Cluster headaches caused me to start examining how to take better care of myself way before I even finished university, when I was still boozing too much and eating crap and not sleeping enough. If those habits had continued unchecked, maybe I would have experienced other ramifications down the road which could also have become uncomfortable, expensive and hard to fix...which is also why our nation needs to look at health care through a preventative lens, and not limit what it is willing to treat.
While cluster is my burden, sometimes I imagine that it also helps me. It would be hard to go so far as to say that I'm grateful for it, but as with most things, I have learned from its enormous challenges, and in my heart, I know it could be much much worse. So today, I'm grateful.
[special thanks is extended to clusterheadaches.com, a resource that improves every year, and has provided me with more help than any other person or experience since I was diagnosed with cluster]