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It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain sprang behind my right eye. It was followed by rapid jolts, similar to electric shocks. As each class came and went, the pain subsided and then returned with increased force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain behind a single eye that persists up to several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, severe agony around one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of long pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started 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 worsened through her youth. Drinking in her adolescence, like several causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation 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 remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.

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

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Leading specialists in treating the disorder note this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate 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 recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with occasional episodes are handled with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a