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It was a gloomy weekday in the 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. This was followed by quick shocks, similar to electric shocks. As the school day came and went, the pain eased and then came back with increased force. Four 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 paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain around a single eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began 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 worsened through her youth. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan life around unpredictable pain took its toll. She particularly disliked 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 robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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

Ancient healing texts suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Leading experts in treating the disorder explain this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and medication until the attack eased.

National guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short bouts with occasional episodes are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a