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It began on a gloomy weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation erupted behind my right eye. This was followed by quick shocks, like electric shocks. As each class progressed, the pain eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared frequently that autumn, 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 pattern: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind a single eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and men are more often affected. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician looked up 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 severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.

National guidance on management recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short cycles with occasional episodes are managed with abortive treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a