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It was a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation bloomed behind my right eye. Then came quick stabs, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain behind one eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, excruciating pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient healing texts propose unusual remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced 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 molars extracted because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with acute treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a