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It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain around one eye that persists up to three hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks usually start with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation 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 obtaining 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 first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed 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 brain. Leading experts in treating the disorder note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 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 twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a