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It was a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden sensation sprang behind my right eye. Then came quick stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort behind a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating pain focused on one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her father 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 time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation 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 winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack passed.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with acute therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a