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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by rapid jolts, like lightning bolts. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain around one eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have continuous attacks, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally classified by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in treating the disorder explain this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. 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 calm advisor guided me through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant specialists believe the guidance 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 bout dictates the treatment.” Short cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, 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 head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a