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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. Then came rapid shocks, like electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 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 for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with sudden, severe pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She particularly disliked 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 incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented 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 attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts propose bizarre treatments for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more folk cures.

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

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? 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 dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the approach.” Short cycles with occasional attacks are handled with acute therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a