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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. It was followed by rapid jolts, like lightning bolts. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain behind one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value 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 documented throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk cures.

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

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent specialists in treating the condition note this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

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

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief bouts with occasional episodes are handled with abortive therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a