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It began on a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my right eye. It was followed by quick stabs, like electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on 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.

Cluster headaches typically start with severe discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe agony around a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value 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 described across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what some experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a