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It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my right eye. It was followed by quick shocks, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that persists up to three hours.

About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. 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 office work after moving, but often hid her condition. She was fired from one job, partly 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 unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small 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 facility.

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Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient healing records propose unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

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

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with occasional attacks are handled with abortive therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a