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It began on a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the pain eased and then came back with increased force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that fall, and again 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 pangs on the train, full-blown 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.

Cluster headaches often start with severe pain around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches usually start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to plan life around erratic pain took its toll. 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 children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts suggest unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in treating the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a