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It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe discomfort around a single eye that persists for three hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children 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 episode inside a facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in treating the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent 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 felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are handled with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a