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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort behind a single eye that lasts for three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate 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 described across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 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 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with occasional episodes are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a