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It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe pain around one eye that lasts up to three hours.

Approximately one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began 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 deteriorated through childhood. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. 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.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing records suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short bouts with occasional attacks are managed with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a