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It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort around a single eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks usually start with abrupt, severe agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. 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 found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst 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 throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

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

The disorder were only formally classified by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a