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It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my one eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning 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 first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing records propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with abortive treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a