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It was a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation sprang behind my right eye. Then came rapid jolts, like electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks usually begin with abrupt, excruciating agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate 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 documented across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, 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 charity, it was she who replied. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen treatment and medication until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a