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It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation erupted behind my right eye. Then came quick jolts, similar to electric shocks. As each class came and went, the pain eased and then came back with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in the 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 shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain around one eye that persists for several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often affected. Cluster headaches usually begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially classified 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 key artery which supplies blood to the brain. Leading specialists in treating the disorder note this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling 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 rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are managed with acute therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a