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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. This was followed by quick stabs, like lightning bolts. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around one eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically start with abrupt, excruciating pain around one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. 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 children during the paralysis caused by the most severe 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 attack inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief cycles with occasional episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a