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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe pain around one eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks typically start with sudden, severe agony around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl 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 adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially hated 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 robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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

Ancient healing texts propose bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Prominent 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 observed the episodes in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a