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It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain sprang behind my one eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain behind one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks typically begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant 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 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records suggest unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent 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 life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with occasional attacks are handled with abortive treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a