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It was a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. It was followed by quick stabs, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, 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 headaches.

This condition often start with intense discomfort around one eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding 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 office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical texts suggest unusual treatments for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Leading experts in treating the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a