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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain erupted behind my right eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the discomfort eased and then came back with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical healing records suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most 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 dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a