Full-Blown Suffering: My Battle With the Puzzling Pain of Cluster Headache Syndrome

It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my one eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain around one eye that persists for several hours.

Approximately one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches typically begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing texts suggest unusual treatments for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack eased.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of some people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short cycles with infrequent attacks are handled with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a