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It began on a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with greater 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 paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

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

About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing records suggest unusual treatments for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

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

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known people.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a