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It was a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around a single eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “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 fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value 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 documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical records propose unusual remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs 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 identified, patients may be referred to specialist clinics. But many first arrive to A&E 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 recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack passed.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with acute therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a