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It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that persists up to several hours.

Approximately one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.

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

The disorder were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with abortive therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a