Full-Blown Agony: My Battle With the Puzzling Suffering of Cluster Headaches
It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my one eye. It was followed by quick shocks, similar to electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense pain around a single eye that lasts for several hours.
Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks typically begin with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.
Historical medical records propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the head. Leading specialists in treating the condition explain this.
In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode passed.
National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.
But leading specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief cycles with occasional episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.
The national guidelines need revising to reflect a
