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It began on a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain erupted behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain behind one eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic cycles; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

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,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some people.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with abortive therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a