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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind a single eye that lasts for three hours.

About one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks usually begin with sudden, severe agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation 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 portable toilet.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient medical texts propose bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. 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 calm advisor talked them through oxygen treatment and drugs until the attack eased.

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

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional attacks are handled with abortive therapy alone. More prolonged 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 cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a