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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. Then came rapid shocks, like lightning bolts. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain around one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks typically begin with sudden, severe pain around a single 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 accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient healing records suggest unusual remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, 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.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the attack eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional attacks are handled with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a