🔗 Share this article

It was a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain subsided and then came back with greater 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 pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain behind one eye that lasts for three hours.

About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually start with sudden, excruciating agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity 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 advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced 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 pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a