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It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks usually begin with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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

Historical healing texts propose bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional episodes are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a