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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. Then came quick shocks, like lightning bolts. As the school day progressed, the discomfort subsided 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 ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain behind one eye that lasts for three hours.

About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Attacks typically start with sudden, severe agony around one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have continuous attacks, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning 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 earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing records propose unusual treatments for what some experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from 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 “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are handled with abortive therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a