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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort behind a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Support 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 office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic 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 remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient healing texts propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short cycles with occasional episodes are handled with acute therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a