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It was 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. Then came rapid stabs, like lightning bolts. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value 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 throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor researched his complaints.

Specialists 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 ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced 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 the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a