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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain sprang behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around one eye that lasts up to several hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate 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, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic 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 cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing records suggest unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

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 agony,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a