Clusterhead

I spent the morning weed whacking the pathways between my farm vegetable rows. Even in the slightly cooler morning hours, the heat was stifling, so I opted for shorts. Weed whacking done, I looked at myself, covered in dirt and grass clippings, dripping in sweat. I could hardly see my legs. Best not to head back to the house until lunchtime when I could hop in the shower. The tomatoes needed weeding, so I set to work pulling the lamb’s quarters and nutsedge from around the growing tomato vines. 

Without warning my right eye exploded in pain, an acid-coated knife slowly cutting my eye from its socket. I dropped from my squat to my knees, grabbing at my eye. The pain was piercing and all-consuming. I banged my head against the hard ground, anything to relieve the pressure. All my treatments were back at the house. I was home alone. I tried to get to my feet, but my knees kept buckling under the weight of the pain. “Fuck! Fuck!” was all I could manage as I rolled on the ground, tears streaming from my swollen, twitching eye. I can’t say how long I stayed there, an eternity filled with pain and the hollow ache of being alone. Eventually, the attack eased enough that I was able to stumble back to the house where an ice pack and a red bull waited.

I have chronic cluster headaches. Don’t let the word headache fool you. These are no mere headaches. Characterized by one-sided pain centered around the eye, these attacks are considered the worst pain known to medicine. The headache comes with at least one cranial autonomic symptom on the same side as the pain – tearing, runny nose, swollen eye, droopy eyelid, or facial sweating. The attacks, which last fifteen minutes to three hours, come in clusters lasting weeks or months around the same time every year, often in the spring or fall. Episodic patients are pain-free for the rest of the year. A small percentage of cluster headache sufferers, like myself, never get a break; we suffer year-round. During an attack, the pain is so intense the person cannot hold still, often pacing, rocking, or banging their head against something.

I have had cluster headaches for sixteen years. The first fifteen years were episodic, with long periods of remission. I could almost forget about them between episodes. Last year, the headaches never went away. I have had multiple attacks every day for over a year now. I have tried numerous medications and treatments, even spending two weeks in the hospital to get them under control. 

Spend much time around someone with cluster headaches and you’ll soon learn that we refer to them as the Beast. Headache is a dismally poor word for describing this torture, and often leads others to dismiss the pain. “Why be so dramatic? It’s just a headache.” Or “Oh, I’ve had a bad headache before, I know exactly how you feel.” I am not exaggerating, and sometimes I’m not sure I’m being metaphorical when I say it feels like there is a beast drilling into my head, trying to push my eye out from its socket. At other times, I’ve told people it feels like being waterboarded with acid eyedrops. One drop alone is hell, but the accumulation of drops over weeks, months, or even years can drive one to insanity.

Nightmares plague my sleep. Often, they are about something attacking me. A saber-toothed tiger crushes my head in its jaws, one of its large, front incisors piercing my eye. I am Harry Potter being chased by Voldemort as the scar on my forehead explodes in agony. I wake from these nightmares in a full-blown cluster attack. One night, I woke up and heard someone whimpering in my bed. For a moment I looked and felt around, wondering who it was. Then the pain split through my dissociation and I realized it was me. 

 The most memorable nightmare was not a precursor to an attack. I dreamt I was lying in bed when I found a wooden horse beside me. Curious, I touched it. As I did, millions of black widow spiders spilled out of its inner cavity. I woke with a start. Once my breathing stilled, I knew instantly what it meant. The cluster headaches were a trojan horse. The anxieties, fears, insecurities, and hurts hidden inside of them were what could really kill me. 

Another nickname for these is suicide headaches. Cluster headache sufferers have twenty times the suicide rate of the general population. The pain is torturous. Sometimes people take their life during an unrelenting attack. Almost everyone has comorbid depression or anxiety because of the condition. The depression paired with the pain creates despair that leads some sufferers to suicide. I have never considered suicide because of these attacks, but they have driven me to dark places. Often in the shower, I have contemplated taking a razor blade and slicing across my forearm. I could visualize the blood dripping down into the tub and washing away. I went through a period of self-injury in my younger years. I could remember the seductive stillness that used to come as the razor sliced through my skin, cutting the noise and anxious thoughts with one clear, clean stroke. I longed for that stillness. Then I would snap out of it, scared of myself. I knew I didn’t want to die; I just wanted the pain to stop. Or at least to be in control of the pain.

After the morning’s attack abated, I hopped in the shower. As the dirt and grass washed away, a trickle of red flowed with the brown down the drain. I looked at my clean legs to find they were covered in bruises and cuts from the debris the weed eater had kicked up at me. I hadn’t felt anything. Given the way my legs looked, I should have felt something. My inability to feel or notice this was unbelievable to me. Had the pain of the headaches become so great I could no longer feel anything else? The physical numbness only added to my feeling of emotional numbness and isolation. In a moment of desperation to feel, I impulsively grabbed my nearby pocketknife and stabbed myself in the forearm. Not deep, I only drew a little blood, but the action startled me. I tossed aside the knife, threw on some clothes, and rushed out the door to go to the farmer’s market.

Driving to market, I fell deep into feelings of despair and aloneness. I cried aloud, “Doesn’t anyone hear me screaming?” A prayer, maybe, though at that moment I’m not sure I believed anyone, or anything was listening. I felt desperately alone, abandoned to my pain. The tears flew, only drying as I pulled up to unload for market. My therapist, who I had not seen at that market before, walked by and spoke to me for a few minutes. Later, a friend from church was buying some beans from me when a headache hit. She came behind the table and ably took my place selling produce to customers while I paced and cried in pain at the back of the tent. Between sales, she made sure I had water and the treatments I needed. She stayed with me after the pain passed to keep me company. When it came time to pack up, another headache hit. That attack was the worst of the day. I had to take an Imitrex injection to stop it, which left me nauseated and confused. As I debated the safety of driving home, two more friends showed up, packed up my stand, and drove me home. Three visits, three answers to my prayer, three affirmations that I am not, and never have been alone. 

As I am writing this, pain is starting to build behind my right eye, my eyelid is twitching, and there is a dull ache in my jaw. I have slipped on my oxygen mask (a common and amazingly effective treatment for clusters) and feel at peace. I have better medications now and better tools for coping with the pain. I have a nurse practitioner and a neurologist who continually work to treat the clusters effectively. I have family and friends who show up time and time again with love and rides home and expert vegetable salesmanship. I may be the only one who feels the physical pain, but I am not alone.

-Karen Mann

Karen Mann is a farmer and pastor living in rural Virginia with her wife and two children. She raises a variety of vegetables for farmer’s markets plus a handful of goats and chickens. Most of her writing comes in the form of sermons. She recently began writing about her experience with chronic cluster headaches.