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It was a dreary Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my one eye. Then came quick shocks, similar to electric shocks. As each class came and went, the discomfort subsided and then came back with increased intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort behind a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Cluster headaches usually start with sudden, severe pain around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with acute treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of 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 signals.

The official guidelines need revising to reflect a