It began on a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. It was followed by quick jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.
The attacks returned repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with intense discomfort behind one eye that lasts up to several hours.
Approximately one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the lack of extended pain-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.
Still, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Ancient medical records propose bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading specialists in treating the condition explain this.
In 1998, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician researched his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack passed.
National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But leading neurologists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with occasional attacks are handled with acute therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.
The official guidance need revising to reflect a
Elena Hartwell is a multidisciplinary artist and educator passionate about fostering creative communities in London.