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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. Then came quick stabs, similar to electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind one eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Attacks typically begin with abrupt, severe pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper rated 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 amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around unpredictable attacks took its effect. 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 paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are handled with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. 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 decreases nerve signals.

The official guidelines need updating to reflect a