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It was a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. It was followed by quick stabs, like electric shocks. As the school day came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown pain 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 intense discomfort behind one eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Attacks usually start with sudden, severe pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually 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 dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable attacks took its toll. She especially 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 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 across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only officially classified by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, 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.

In spite of such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short cycles with occasional attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a