Unbearable Agony: My Struggle Against the Enigmatic Pain of Cluster Headaches
It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain bloomed behind my one eye. Then came quick stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.
The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with intense discomfort around one eye that lasts for three hours.
About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks usually begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her attacks as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.
Historical medical texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.
The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Prominent specialists in treating the disorder note this.
In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.
Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack eased.
National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.
But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are managed with acute treatment only. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.
The official guidance need updating to reflect a
