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It was a overcast weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort behind a single eye that persists up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical records propose unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, 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 deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming 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 alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a