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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. Then came rapid shocks, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort around one eye that lasts up to three hours.

About one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks 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 condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst 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 portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional attacks are handled with abortive therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a