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It began on a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort behind a single eye that lasts for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe agony around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the severity. One research paper rated the sensation 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 number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan life around unpredictable 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 looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient healing texts suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed account 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 classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with abortive therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a