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It was a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. This was followed by quick jolts, like lightning bolts. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain behind a single eye that lasts up to several hours.

About one in 1,000 people suffer by the disorder, and males are more often affected. Cluster headaches typically begin with abrupt, excruciating pain around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She particularly 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 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 obtaining tickets for a significant concert, only to have an attack 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 experts in a publication on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical healing texts suggest unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen treatment and drugs until the episode passed.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with acute therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a