🔗 Share this article

It was a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. Then came quick stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain around a single eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Support finally 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 concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 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 recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and medication until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with abortive therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a