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It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain bloomed behind my right eye. This was followed by rapid shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that persists for three hours.

About one in 1,000 individuals are affected by the condition, and males are more often affected. Attacks typically start with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed 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 life around erratic attacks took its effect. 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 incapacitation 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 major concert, only to have an attack inside a facility.

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

Ancient medical records suggest bizarre remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

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

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a