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It began on a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. This was followed by quick stabs, like lightning bolts. As each class progressed, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort around one eye that persists for several hours.

About 1 in 1000 people suffer by the condition, and men are more often affected. Attacks usually begin with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic 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 put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Historical healing records suggest bizarre treatments for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified 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 blood vessel that delivers blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, 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 started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are handled with acute treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a