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It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after 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 obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest 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 spirit who attacked his sufferers' heads.

Historical medical records suggest unusual treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Leading experts in treating the disorder note this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are handled with acute therapy only. Longer or more intense bouts 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 side of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a