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It began on a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp pain sprang behind my right eye. This was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort around one eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually start with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started 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 childhood. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She particularly disliked 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 most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode 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 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk cures.

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

The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief cycles with infrequent episodes are handled with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a