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It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain behind a single eye that persists up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with sudden, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

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

Still, the failure to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in treating the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is in charge 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. One man's attacks began 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 correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches 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 pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief cycles with occasional attacks are handled with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a