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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently affected. Attacks typically begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its effect. She especially 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 paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.

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

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode passed.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a