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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid jolts, like lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around one eye that lasts for several hours.

About 1 in 1000 people suffer by the disorder, and men are more often affected. Attacks usually start with sudden, severe pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the inability to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Historical medical texts suggest bizarre treatments for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

National guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading specialists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are handled with acute therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a