🔗 Share this article

It began on a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain behind a single eye that persists up to three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, severe agony around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.

But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are managed with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a