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It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. 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 worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around erratic pain took its effect. She especially disliked being unable to plan social events, 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 liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some observers would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition 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 extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a