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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my right eye. This was followed by quick shocks, like electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted 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 clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to organize life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by global 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 artery that supplies blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced 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 pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a