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It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

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

This condition typically start with severe discomfort behind a single eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate 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 earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more folk remedies.

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

The disorder were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with occasional attacks are handled with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a