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It began on a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came rapid shocks, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent 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 several hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks typically start with abrupt, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw 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 causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack 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 antiquity,” write experts in a publication on the subject. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Prominent specialists in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a