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It began on a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain erupted behind my one eye. It was followed by rapid jolts, like electric shocks. As the school day progressed, the discomfort subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

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

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking 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. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around erratic attacks took its effect. She particularly 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 paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining 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 originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records propose unusual remedies for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a