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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with greater force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain behind one eye that lasts up to three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often affected. Attacks usually begin with sudden, severe pain focused on a single eye that peaks within minutes 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 facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Leading experts in treating the disorder explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis 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 ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But leading specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent episodes are managed with abortive treatment alone. More prolonged 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 procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a