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It began on a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain bloomed behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort around one eye that persists for three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more frequently affected. Attacks usually start with abrupt, severe pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan life 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 cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of 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 medical records suggest bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a