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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came quick jolts, similar to electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort behind one eye that lasts for three hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Attacks typically start with sudden, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities 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 family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading specialists in treating the disorder note this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with acute therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a