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It began on a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by quick stabs, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind one eye that lasts for three hours.

About 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks usually start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor talked me through oxygen treatment and medication until the episode eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short bouts with infrequent attacks are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a