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It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind one eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches usually start with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients 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 thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate 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 described across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical records suggest unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent 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 deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are handled with abortive therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a