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It began on a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my one eye. It was followed by rapid shocks, like electric shocks. As each class progressed, the pain eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently that fall, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain behind one eye that persists up to three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, severe agony focused on one eye that peaks within minutes and continues 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. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding 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 episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its toll. She especially disliked 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 paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient medical texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, 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, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and medication until the attack eased.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a