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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. This was followed by quick shocks, like electric shocks. As each class came and went, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain behind a single eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, severe agony around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man'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 underwent four surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm volunteer guided them through oxygen treatment and medication until the episode eased.

National guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short bouts with infrequent attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a