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It was a overcast Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort behind a single eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often affected. Attacks typically begin with sudden, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

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

Nevertheless, the failure to organize daily activities around erratic pain 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 looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only officially classified by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Prominent experts in treating the disorder explain this.

In 1998, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a