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It was a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. It was followed by rapid shocks, similar to electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain around one eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically begin with abrupt, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, 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 co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

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

But leading specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with acute therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a